Joanna RudnickFilmmaker and POV alum Joanna Rudnick writes in with an update about the ACLU’s recent lawsuit against Myriad Genetics, which challenges Myriad’s patent on the breast cancer genes.
In the documentary film In the Family, which had its broadcast premiere on POV in October 2008, I shared my own story of testing positive for the “breast cancer gene.” The focus of the film was the life-saving, yet excruciating consequences of learning about that test result: I was living with an up to 87% lifetime risk of developing breast cancer, and an up to 60% lifetime chance of developing ovarian cancer.

While making the film, I learned that a private company based in Salt Lake City called Myriad Genetics owns the patent on the breast cancer genes. During the 13 years that women have been getting their blood drawn to find out whether they have an extremely high risk of developing hereditary breast and ovarian cancer, Myriad has been the only place in America where diagnostic testing could be performed, making it the only place where research on these genes can be conducted.

Recently, the ACLU has challenged the patent on BRCA1 and BRCA2, filing a lawsuit against Myriad. When I heard the news, I was in between my bi-annual MRI monitoring for breast cancer and packing to attend the Facing Our Risk of Cancer Empowered (FORCE) conference in Orlando, which was celebrating ten years of advocacy around issues affecting high-risk women.

Here are some ways in which Myriad’s patent hurt women all across the country:
Why does Myriad have a patent on these genes? Did they invent the genes? Of course not, yet some loophole in the U.S. Patent System gave Myriad a monopoly on the breast cancer genes, allowing them to send cease-and-desist letters to universities and labs researching the genes across America. Myriad’s patent essentially cut off all efforts to develop a better, cheaper diagnostic test for the “breast cancer gene” that would be accessible to more women.

Why does testing for the breast cancer gene cost $3000? There are women, like Martha Haley, who appears in In the Family, for whom the $3000 cost of the BRCAnalysis® test from Myriad seems an insurmountable obstacle. Martha eventually gets testing through an Avon-funded program for underinsured women at John H. Stroger Jr. Hospital of Cook County. Dr. Pam Ganschow, who gives Martha her test results, applied for the Avon program when she was running into barriers with Myriad’s own special assistance program. During the same amount of time, she has tested over 100 underinsured women through the Avon grant for the breast cancer gene, compared to only four women through Myriad’s program.

For In the Family, I went to Myriad’s headquarters in Salt Lake City, Utah, to find out more. After an extensive tour of the lab, I sat down to interview the founder and chief scientific officer of Myriad, Dr. Mark Skolnick. The lab was beautiful and state of the art, but Skolnick’s answers surrounding the fixed pricing, ethics and detrimental consequences of gene patenting were unsatisfying and dubious (“People don’t complain about having patents for their Ipods,” he told me), leaving more questions than answers and leading to where we are now with the ACLU challenge.

Watch my conversation with him:

If women are removing their breasts and ovaries based on this information, is a second opinion too much to ask for? I was lucky enough to get a second opinion — I was re-tested in Canada, outside of Myriad’s lab. The result was still unfortunate. I had the mutation, but I also had something most women and men who test for this mutation don’t have — the security of a second opinion.

Over the last eight years, I have pleaded with doctors and scientists to tell me more about my odds of developing cancer. Their answers are always the same: “One day, we will understand how other genes, so called “modifier” genes, increase or decrease your risk.” Genes don’t act in isolation. How can we find out how BRCA works with other genes if Myriad’s patent limits this essential research?

Please visit the ACLU site to sign a message of support for the plaintiffs in their case against Myriad Genetics.

Published by

Former POVer Ruiyan Xu worked on developing and producing materials for POV's website. Before coming to POV, she worked in the Interactive and Broadband department at Channel Thirteen/WNET. Ruiyan was born in Shanghai and graduated from Brown University with a B.A. in Modern Culture and Media.